Dad diagnosed with mds please read i need advice

[Sunshine123]

Diagnosed with MD's 11/2010. He is being treated with revlimid and hydroxurea. This has been hard for us. I am struggling with how to help my dad. He is a proud man and wants to be strong and he keeps on refusing help and tells me when he needs it he will ask. I love my father so much and I want to respect his wish but I also want to make every moment I have with him count. I just find myself crying and wishing this never happened he is only 63 years old. I hate to watch him go through this. Someone please help me. Right now his platelet were over a million his hemoglobin at 8.0 and they have him on revlmid hydroxurea and angrrliad to keep his platelets down. He has not been feeling to good with all this medicine and is telling me to stay home don't come over etc.. he has been doing good for a month or so we thought they were regulating him finally and then all of a sudden his numbers. go crazy.

[Greg H]

Sunshine,

Sorry to hear about your Dad. I'm not smart about the hydroxyurea and Anagrelide; most MDS folks I run into around here have too few platelets instead of too many.

I have MDS and need red blood cell transfusions every other week. I'm a little younger than your Dad, and probably have a daughter about your age. I don't know how your Dad feels or what kind of help he might need, but I feel pretty much fine -- other than being tired and having blood pounding in my ears at night. As a result, I don't really need any "help."

So, if my daughter told me she wanted to come over and help me because I have MDS, I'd probably tell her I didn't need any help. On the other hand, if she called up and wanted to go to a movie, or a ballgame, or out for dinner or coffee, I'd definitely take her up on it.

It's pretty much a pain having a disease like MDS, and part of the pain can be having folks make too much of a big deal about it (I know, it is a big deal, but no one like to be reminded about how big a deal it is all the time.).

Maybe if you can take the focus off of your Dad's disease and just take him out to a movie, or bowling, or whatever he likes to do, you'll get a little further toward your goal of helping him.

Remember, that's just one old guy's opinion. Your Dad is lucky to have a concerned and loving daughter.

Good luck!

Greg

[Sunshine123]

Hi Greg

Yes u are right about the platelets but he has a rare form. Right now his hemoglobin is 8.5 and his Dr. Asked him if he wanted a transfusion on Friday and he declined he feels like crap and he is refusing the help because he finally said he don't want us to see him this way he wants to keep his dignity a little. My sister took my father to the supermarket and he could barely walk he had ride in the motorized cart as my sister cried as they shopped. Then my father was telling me that if he passes there are things I need to know and for me to stay strong. Then my brother came over and he told him to make sure he helps us. I think he just feels really bad from all those chemical pills he is taking and he is depressed and feels like he is dieing. Thank you for your advice though I will not ask him if he needs help I will ask if he wants to watch a movie or just come over to chat. I thank you for the best advice I have gotten and I hope I can count on u for more when needed

[donna j.]

.Dear Sunshine,
I agree with you regarding Greg's advice. Beautiful and right on the money. I was diagnosed with MDS in July following a sailboat race, which we had just won on the weekend. No more racing, no sunshine, no alcohol, no crowded Yacht club parties. So for the next few months as I met with oncologists and had cbc's on a regular basis and had my first of several transfusions, my husband continued our previous lifestyle. It was strange, because it was what we did, and if i died, it was what he would do, but I couldn't understand if he understood the gravity of my situation or not. He changed overnight about 2 weeks ago. He wants to go to the dr with me and limits his socializing. I think we all handle this shock differently, and on a different schedule. .
When I am feeling good, I am out and about, with necessary precautions as I have low white cells and red and platelents, and I feel I will be able to manage this illness. When I don't feel so well, and it never seems to coincide with my CBC numbers, I think alot about dying, and making necessary plans for wills and directives. Sometimes I share a little, but mostly I don't. [i] don't sleep at night, trying to wrap my brain around all this. So for me, my feelings of mortality and depression are tied directly to if I feel weak, my gums are bleeding, or I have strange aches and pains. I do however, have a new found appreciation for my body and the assaults it can handle, whether the result of the disease, or testing or treatment for the disease.

So as I said in the beginning, Greg has wonderful advice, and your father is lucky to have you. My one mantra is "why don't I have a daughter?" You and your sister will make his life so much more kinder and gentler for him.
Donna

[lfeinsmith]

what is the situation now.I have MDS as well and have a hgb of 13.
anc 956,platelet count 36000.
Blsts less than 5%
No therapy.
Had the disease since at least dec 06

Les

[m garmon]

I read your article on your father not needing you. I would like to offer you a something that works for us. My father in law is a very proud man and does not want people feeling sorry for him, so he did not want help. We changed it up a little and started asking him to help us sometime. We ask him to go to Home Depot to help pick out plants because he knows more about what will grow right now. We borrow something from him and ask him the best way to use it. We ask him over to dinner or we go over to watch a ball game and take snacks or hotdogs, we go by just to drop him off a special candy we know he likes, visit for a hour or so then leave. It is very important that you keep him built up so that he feels manly, needed and important not sick and old. I know you worry about his health, so does he but he still wants to be the strong one. Having everyone around because you are sick can bring you down. He will call when he needs you, My father in law does, finely.

[bebop]

firstly I am sorry you are going thru this. My dad was much older when he was diagnosed. he was 80. he was starting to grow weaker already so it was a little different. Let your Dad do whatever he feels like. When the weakness comes he won't be able to do alot for himself and let me tell you that is the hardest thing to watch. Dad was always busy doing something. always! once he started getting worse he got very depressed even though he would never admit that. he would say "I just can't do anything anymore" I am an old man. worthless. which he was not! do things to build really good memories and enjoy the time! your dad in fairly young so you have lots of time! I am still praying for a cure!

[Darice]

Originally Posted by m garmon

We changed it up a little and started asking him to help us sometime.

This is exactly the approach I was thinking as I read earlier replies. My husband is 70 and has really had a rough go of things. I find myself protecting him too much . . . he needs to feel he is still an important, contributing member of our partnership. I also try to find things I need his help and advice with. Lately he has been wanting to get out with the chain saw or machete and go to work on some of our overgrown trees and bushes. I'm really trying to stay away from that one, but if I keep putting simpler chores in front of him . . . and keep the chain saw hidden . . . we're getting along OK.

[Sunshine123]

Well greg i really took you up on your advice! I stayed with him this weekend he is not doing so well he is having a hsrd time walking around becsuse he cant breathe and his back is hurtin his hemoglobin is 8.4 and his platlets 320000 which is good for him because they r usually 1 million well instead of focusing on his illness i focused on him and we watched some movies had some talks and ate dinner together and spent some quality time together and then did little things to help like fill out papper work for him go to the bank and the postoffice but we did it together i took him to his dr appt today also i took off from work and his hemoglobin is now 8.8 but he had the arenist shot on friday and now he cant get a blood transfusion his platelets went back up to 470000 which is not good so he still has to take the angreliade which makes him feel like crap he also lost 16 lbs in 3 weeks she is sending him for another cat scan to see if anything is going on that is causing him pain when he breaths ( maybe mild pnemonia) we left the dr office and we went to eat some lunch although i am worried about him i think i picked him up a little thanks fir your advice and i hope u read this i just dont know much about these message boards and get it to you if anyone else reads and can guide me i would really like greg to know

I alsi want to thank everyone else for listening this is the greatest place fir help and support with people who are fighting this disease my thoughts and prayers are with everyone

[Greg H]

Hey Sunshine!

It's so great to hear that you were able to spend some quality time with your Dad -- and that you also got to accompany him to the doc. My wife goes to all my appointments, and we really find that it helps to have four ears listening to the doc.

I'm sad to hear that your Dad is in so much pain from breathing trouble. I can only speak for myself, but low Hgb tends to make me short of breath as it gets lower. For me, that translates into moving really slow, instead of pain. But, near as i can tell, everyone reacts to slow Hgb differently. Some folks (like me) don't have too much trouble until the level gets down to 7.5 or so; others can have an 11 and not be able to pull themselves out of bed.

I'm also not smart about the implications of extremely high platelets in terms of pain. But I think it's good the Doc is looking at other possibilities; I don't recall too many folks complaining of pain around here.

How is your Dad's white cell count -- or neutrophils and lymphocytes? Getting low on those can make you more susceptible to infection. I had a nasty little two-day bout of pneumonia and pleurisy a few months ago. It was short-lived, but that was good, because the pain was as bad as a kidney stone! That weight loss is also pretty dramatic and is not something I hear about on a regular basis from folks with MDS. I lost a bunch of weight after being diagnosed, but mostly because I quit drinking beer, and started eating right and exercising. It sounds like something else is going on with your Dad.

I was notified of your post because I subscribed to this thread -- It's something you can choose when you reply to a post. The Board will send you an email whenever someone posts to a thread you are interested in. There's also a way to send forum members private messages and emails through the marrowforums system.

If the docs can get your Dad's pain down, it may be that he will be able to come to terms with having MDS. It's always hard and depressing and maddening to find out you have a disease that's trying to kill you. But so many folks are able to live a long time with MDS -- not everyone, but enough to give us hope once we get over being angry and depressed about having this crappy disease.

I hope you and your Dad have many, many more quality weekends together!

Take care!

Greg

[donna j.]

Hi all,

For those of you who are transfusion dependent, or your loved ones are, do you all get the transfusions in the hospital? I feel a little uncomfortable, walking down a long corridor of sick people in the hospital, with all my blood counts so low. Does anyone wear a mask or gloves? I am curious because I got a blood transfusion last Wednesday and am now home sick with a fever. Any similiar experiences?

thank you,

Donna

[Greg H]

Hey Donna!

I get my transfusions in my hospital's Same Day Surgery unit. There are individual rooms for each patient, most of whom are awaiting GI procedures, pain management injections, or the administration of IV antibiotics. Some of these folks are pretty sick, but, on the whole, they seem less infectious than the inpatient folks. And the environment, while busy, is preferable to the moaning one sometimes encounters on the inpatient wards.

Maybe your hospital has a Day Surgery or Outpatient procedures unit?

Take Care!

Greg

[Marlene]

John always got his transfusions at the hospital and he always work a mask when walking through the hospital. He would take it off once in the room unless someone was clearly ill with a respiratory cold. But that was rare since most in the room were getting chemo or blood. Anytime he was in the common areas of the hospital or the medical building where his doctor was, he wore a mask until his ANC got up to 1200. During the cold and flu season though, he wore it no matter what.

[riccd2001]

Originally Posted by donna j.

Hi all,

For those of you who are transfusion dependent, or your loved ones are, do you all get the transfusions in the hospital? I feel a little uncomfortable, walking down a long corridor of sick people in the hospital, with all my blood counts so low. Does anyone wear a mask or gloves? I am curious because I got a blood transfusion last Wednesday and am now home sick with a fever. Any similiar experiences?

thank you,

Donna

Since Feb.2008 to end Oct.2011 I've had 170 units of PRBCs infused both in ICU and out-patient area of hospitals. I've had a couple of bad reactions (chills, fever); however, I regularly receive a pre-transfusion treatment of regular tylenol, benadryl, and hydrocortisone IV. This has worked nicely for me for the last three years. No mask or gloves or adverse reactions but YMMV.

Another point of importance for me is date of donation/expiry, and the variation of actual volume amount which has ranged from 238ml to 353ml (a difference of 48 per cent is considerable IMO). Another consideration is that as the number of transfusions and antigens increase, the cross/match process takes longer to do and becomes more difficult for the lab to find a donor that is compatible. For me fresh blood is preferred but compatible match is essential regardless of expiry date.

[donna j.]

Thank you all for sharing your experiences. I will start to wear a mask as I go through the main parts of the hospital, and inquire if there is anywhere else i can get the Red blood cells and platelets.

Dear Riccd2001,

What does PRBC's stand for. Also what does YMMV stand for. Sorry for my ignorance.

Thanks
Donna

[cathybee1]

Two very good questions:

PRBC are packed red blood cells

YMMV, I had to laugh. I always thought it meant Your Mileage May Vary...it does fit for blood transfusions....let's see if it's a cross-platform term

[riccd2001]

Thanks Cathybee - you're 100 per cent correct on both!

[donna j.]

OK, next dumb question. Is PRBC, what one normally gets, like when I go to the hospital for a transfusion? Or a concentrated variety? I just had my 5th transfusion, 2 of which were platelets.

thanks,

Donna

[Birgitta-A]

Hi Donna,
Yes, we now always get PRBCs - when I was young many years ago a blood transfusion meant a transfusion of what now is called "whole blood".

You can count how many units of PRBCs you have received and how many platelets units.

I have got 142 units of PRBCs and 9 units of platelets (most of them in connection with small operations or BMBs).
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. Tx dependent from dx until Sept 2010 when I had been taking Thalidomide + Prednisone 3 months .